Parents of children with Cerebral Palsy - have you heard of the GMFCS system?

[Hangingbellyofbabylon]

Someone on another message board pointed me in the direction of the Gross Motor Function Classification System. It is meant to be more meaningful that the usual categories of 'mild, moderate, severe' etc. Basically it works on levels and you see which level your child is/was at aged 2-4 and can then 'predict' the kind of skills your child is likely to achieve in the future.

My dd is nearly 3 (diplegia) and fits the 'level III' description really well. Of couse none of the medical profession will commit to the fact that she will most likely be an ambulant wheelchair user (although I have felt it to be the case for some time). The GMFCS is like someone lifting the blinkers for me - finally something a bit more realistic that gives me an idea of what the future might hold for my DD.

Does anyone have any experience of UK paediatricians using this system? What do you think of it?

www.canchild.ca/Portals/0/outcomes/pdf/GMFCS-ER.pdf

oh no! I'm not sure if I want to look at this, I also suspect my DS will be an ambulant wheelchair user. just don't know if I want it 'confirmed'! I've not heard of it before though.

Hi Hairy - I think it sounds as if our children are quite similar in abilities. I have to be honest, looking at it all has been like a slap in the face because no-one will be honest with us and will actually say what they think the future will hold. I half wish I hadn't looked but am half relieved to have my thought confirmed. It also makes me realise that I've got to keep fighting for what dd needs, like the support at school and the physio appointments etc. She is really bright and has great speech but I think that this masks the full extent of how she is affected physically.

yes I have. someone on here (can't think of the name aaaarh) recommended this book and the system is very helpfully explained in there. I find it a very helpful book anyhow.

Actually that was really interesting. DS comes between level 2 and 3, he turned 4 today and the walking bit with assistive devices comes in at level 2 but the W sitting puts him at level 3, he really struggles with floor sitting.

HBBB have you heard about Footsteps? We go there regularly, now on our 5th visit and have really found it helpful, it is the intensive nature of it that has helped Ds1's strength and walking, he now walks really well with sticks. It is quite expensive but they now have a foundation that is starting to be able to offer some financial support and they know of some other charities that will help. I really would suggest you take a look at it as we have found it so beneficial. Email me at [email protected] if you want to know more (but can you tell me on here if you have as I don't check it very often!)

Just seen you most recent post HBBB, yes DS has good speech to (not without problems though, but still good) and is definatly a sharp little thing. We are hoping to get him a school place in a unit as I really feel he needs this support to thrive and like you I feel the true impact of his problems is masked a bit. His birthday party on Sunday really highlighted aspects of that and I had a bit of a weep then so it's very 'current'!

never heard of it
sounds rather depressing